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![Page 1: Lets Talk: The Story of Community/State Cancer Coalition Partnerships and Cooperation Joellen Edwards, PhD, RN, FAAN and Kristine Harper Bowers East Tennessee.](https://reader035.fdocuments.net/reader035/viewer/2022062620/5519a53a550346ce608b4686/html5/thumbnails/1.jpg)
Let’s Talk: The Story of Community/State Cancer Coalition Partnerships and Cooperation
Joellen Edwards, PhD, RN, FAANandKristine Harper BowersEast Tennessee State University
Rural Health Association of Tennessee Conference November 2013
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Program Goal:
Encourage connection, interaction and engagement among Appalachian communities and state CCC programs and coalitions
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Comprehensive Cancer Control Plan Implementation in Appalachian Communities
Interagency Agreement (2006-present)◦CDC’s Division of Cancer Control◦Appalachian Regional Commission
Followed prior work (2001-2006) ◦ETSU and University of Kentucky
identified personal, community and cultural factors influencing cancer care
◦ARC supported 2004 WVU study to document Appalachian health disparities
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Partners in Cancer ControlComprehensive Cancer Control Program
◦Sponsored by CDC◦Encourages and supports relationships that
will reduce the cancer burden◦Organized and facilitated throughout state
by Manager or Director and staffCancer Control Coalitions
◦Representatives from organizations throughout the state
◦Organized, but more independent and fluid◦Plays various roles
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Overview of the Program
1. Community Cancer Control in Appalachia Forum
2. Roundtables & Forums – and Storytelling
3. Special Topics – and more Storytelling
4. Review & Share Information
Advisory Group◦Kentucky, North
Carolina, Tennessee, Virginia, & West Virginia (and Atlanta & Washington DC)
◦American Cancer Society, State Depts. of Health, other community-serving agencies
Data gathered during each phase of Program
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Phase One: Community Cancer Control in Appalachia Forum 2007
Two-day meeting with leaders from Appalachian communities and state CCC representatives◦60 Participants◦10 States
Discussed “Authentic Appalachia”Identified facilitators and barriers
to implementation of cancer control plans
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Findings: Authentic Appalachian Culture
1. Cancer is perceived as a community disease
2. Strong sense of family pride and connectedness
3. Self-reliance4. Social awareness-
active community members
5. Sense life priorities
6. Generally religious
7. Rooted in the Mountains
8. Believe environment is major influence
9. History of experience with cancer
10. Oral culture
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Facilitators and Barriers
What characteristics are common in these communities and states?
How do these characteristics make it easier (or harder) to improve partnerships for cancer control?
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Findings: Appalachian Characteristics
Storytelling is pervasive (people do it; people love it)
Communities self-identify as “rural”◦Suspicious of outsiders◦Rely on internal networks◦Lack important healthcare access
Serious concern about impact of environment on health
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Findings: Initial Thoughts on Improving Partnerships for Cancer Control
Storytelling may be an effective strategy to engage communities
Locally known and respected leaders must be involved
Local health care providers can play a key role
Environmental concerns can’t be ignored
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Phase Two: Roundtables and ForumsRoundtable: A data-driven
discussion of needs and resources◦19 roundtables, 7 states◦Mini-grants of up to $2,500
Forum: A full-day meeting with data, best practices, needs and resources, and plan development◦9 forums, 7states◦Mini-grants of up to $5,000
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2009 Forums and Roundtables
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– and Storytelling
Storytelling: A community-driven project to discover and tell community cancer story◦3 Communities, 2 States◦$4,000 mini-grants
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Examples: Roundtables in Tennessee
Cancer in Tennessee: Appalachian Roundtable Discussion◦ Sponsored by RHAT◦ Partnered with TN CCC
Program◦ Held in Pigeon Forge◦ Involved local officials
from Appalachian counties
Komen Tri-Cities Community Assessment◦ Blountville◦ Rogersville
Tobacco and Cancer in Appalachian Tennessee◦ Sponsored by RHAT◦ Partnered with TN CCC
Coalition, TN Cancer Registry, UT Extension Service, Mercy Health Partners
◦ Focused on Appalachian counties with particularly high lung cancer rates
◦ Held in Knoxville
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Examples: Forums in TennesseeFACTS Forum
◦Held in Chattanooga Also involved outlying communities
◦Sponsored by Southside Dodson Community Health Center
◦Partnered with Southeast TC2 and Servant Leadership Christian Fellowship
◦African American communities of faith
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RHAT ContributionRoundtable: November 21, 2008,Pigeon Forge44 attendees from 16 counties:
Coordinated School Health staff, breast cancer educators, county mayor, health council, survivors, health department, insurance company outreach, parish nurses, UT Extension agent
Outcomes: Data shared, data collected, state CCC plan shared, new objective added, new coalition, new members, more RHAT exposure
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RHAT Contribution
Forum: Cancer in Appalachia, August 4-5, 2009 in Johnson City
Co-sponsored with RHATRoundtable: Tobacco and Cancer
in Tennessee November 2009, Knoxville
Co-sponsored with RHAT
Report to RHAT November 2011 in Pigeon Forge
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Knowledge Gained from Roundtables and Forums
Much can be accomplished with “little” money
Coalitions gained new members and forged useful partnerships
Some states adjusted their Cancer Plans to reflect priorities from these events
Mini-grant model findings published“Toolkit” would be needed as a guide
to aid communities
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Phase Two: StorytellingThree Story Projects
◦Voices of Light Blue Ridge Healthcare, Morganton, NC Survivorship Produced video of vignettes http://youtu.be/Ja7aRmcn8Ks
◦Our Never Ending Stories Wetzel County Cancer Coalition, WV What it’s like to be diagnosed and treated for cancer Slide show with audio-recorded stories broken into
phases
◦Hope’s Café Webster Springs United Methodist Church, WV Remote location affects every aspect of cancer Live performance play
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Webster Springs, West Virginia
Home of Hope’s Café
Project Director: Jean Tenney
Much Thanks to the First United Methodist Church of Webster Springs, and the Webster County Cancer Coalition!
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Voices of LightMorganton, Burke County, NC
A Story of Hope, Humor, Gratitude, Joy, Service, and Never-ending Faith
https://www.youtube.com/edit?video_id=vNZ-AUWoXVM&ns=1&o=U
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Knowledge Gained from Phase 2 Storytelling is major
◦Effective◦Community members can participate◦Inherently Appalachian
communication styleRecurring questions and concerns
raised in Roundtables and Forums
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Phase Three: Special Topics – and Storytelling
Roundtables – Targeted
Special Topics of interest to communities – narrowed to 5
Storytelling – 8 communities, enhanced training and support
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Special Topics: Questions to be Answered1. How is storytelling used to
communicate in cancer programs?2. Why do some physicians and direct
health care providers get involved in CCC?
3. How do cancer navigation models work?
4. Why do mobile screening units work?5. How can we communicate both the
environmental and lifestyle risk factors associated with cancer?
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Special Topic Findings: Engaging Health Care Providers
Motivators included personal interest and connection
Personal requests from community or organizational leaders encourage provider involvement◦Especially if it comes from someone higher
up◦ Institutional support is critical
Effective use of time and communication is important
Opportunities for funding are helpful
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Special Topic Findings: Mobile Screening UnitsMobile screening is not new to AppalachiaDriven by desire to increase access to
screeningWarm, friendly, non-judgmental staff influence
success of a unitEngagement with CCCs and State Cancer Plans
may increase effectivenessUnits usually owned/operated by a single entity
◦ Follow-up care generally happens within operator’s healthcare system
◦ Need for increased support as some users fall through cracks
Cost is a barrier to long-term use
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Special Topic Findings: Cancer NavigationThere are a lot of different models
being usedNavigation is expanding beyond
“patient navigation”Increased interest and support to
develop an Appalachian Navigator Network◦Enhance navigation across
system/state lines◦Develop evaluation tools◦Improve networking
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Special Topic Findings: The Intersection of Environmental and Lifestyle Risk FactorsThe two “sides” do not interactFacilitating and continuing the
conversation is important to success of cancer control
Common language and focus is critical◦Do NOT use jargon◦Do NOT marginalize participants
Continuing dialogue requires long-term commitment
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Special Topic Findings: StorytellingStorytelling projects were identified
in all 13 statesPrimarily used for coping and supportSometimes used to encourage
screeningMuch storytelling is unofficial and
informalFormalized support and assistance
viewed as helpful, but projects wanted to maintain autonomy
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Phase 3: Storytelling - Expanding the Scope
8 Communities (7 states)◦6 communities completed project
Two days of training◦Story circle methodology (Roadside
Theater)◦Advanced skills (Stage performance
and digital technology)Mini-grants of $4,000
◦Production expenses◦Travel to share with CCC
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Phase 3: Storytelling Products
Live performance (also recorded on DVD)
Video recorded performance (also live-adapted)
Two stages: slide show with audio; live performance
Produced/edited videoTwo groups continued the project
◦Photography-based◦Live performance
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Examples: Storytelling in Tennessee
Survive & Thrive Cancer Support Group◦Sponsored by Wellmont Foundation (Tri-Cities)◦Focus on survivorship and role of support group◦Short Video: DVD and Facebook (
http://www.facebook.com/video/?id=113177211278)
This is My Story, This is My Song◦Southside Dodson Community Health Center
(Chattanooga)◦Focus on breast and prostate cancer to
encourage screening in African American community
◦DVD video
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Phase Four: Review, Share, Disseminate Information
ToolkitsRoundtable and Forum ToolkitStorytelling ToolboxEnvironmental/Lifestyle Toolkit
DisseminationWebsite: http://www.etsu.edu/nursing/ccc/Marketing planPresentations and publications
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Toolkit Example
A Toolkit forDeveloping Events to Connect State Comprehensive
Cancer Control Coalitions and Programs with Underrepresented Geographic Areas
Get the Conversation Started!
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The Tool Kit “How To” ModelUsing this Model Will Engage state and
local peopleBroaden
involvementBe a starting point
and guide postDevelop short-
term, achievable tasks
Using this Model Won’t Solve cancerForce people to be
involvedChange past
difficultiesBecome an annual
activityBe a specific roadmap
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Example: Toolkit Contents
◦ Develop Your Idea Assess Need Identify Partners
◦ Plan and Implement Agenda Development Recruitment Budget Logistics
◦ Evaluation Measurable Goals Stakeholder Needs Linking to Logic Model
◦ Partnerships◦ Outcomes and
Outputs◦ Lessons Learned◦ Give/Get Grid◦ 5 Questions
Overview ◦ Introduction and History
Tools
Conclusions
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Toolkit: Give / Get GridCCC Coalitions &
ProgramsCommunities & Organizations
CCC can expect to give Partners can expect to give
Gives
•Present cancer incidence and mortality data•Statewide communication network
•Access and connections to local leaders and culture•Examples of successful implementation strategies
CCC can expect to get Partners can expect to get
Gets•Improved regional networks and contacts•Identification of strategies and factors that promote cooperation
•Reliable information about the cancer rates in their region•Access to cancer education, resources, and technical assistance
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Toolkit: Sharing Lessons LearnedSmall investments matterLocal success = local advocateNew information leads to new ideasTime is of the essenceBe clear, be transparent, be flexibleLocal resources are limitedLocal views of causes and solutionsContinuity is important
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What Makes This Work?Seven Years and Counting
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Unique Characteristics Interdisciplinary Team
◦ Public Health◦ Communication◦ Nursing
Multiple Modes of Engagement◦ Formal inquiry◦ Mini-grants◦ Training◦ Contracted projects◦ Hands-on
Engaging Different Kinds of People◦ Administrators◦ Healthcare providers◦ Volunteers◦ Academics
Engaging Different Kinds of Organizations◦ State CCC Coalitions &
Programs◦ Local affiliates of
national Organizations◦ Community-based
organizations◦ Churches, universities,
healthcare organizations
◦ Individuals Active Listening!! Some people do this
for a “living”, some people “live” by doing this.
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Unique OutputsManuscripts
◦Publications, TopicsTools
◦Toolkit, Toolbox, Tools ◦Media
ReportsPresentationsGiving an extra nudgeTargeted audienceConnecting people
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Overall Project AchievementsRoundtables and Forums, Special Topics,
StorytellingEvents in 11 statesState CCCs as partnersGamut of local organizations involvedFlexible formatsThousands of people potentially touched
by projectTargeted to community needs
◦Cancer types◦Population◦Best practices
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Publications and Presentations
Presentations to Tennessee Rural Health Association, Tennessee State Legislature, national CCC
meeting, et al.11 Publications, recent examples:
Blackley, Behringer & Zheng (2012)Cancer mortality rates in Appalachian: Description epidemiology and an approach to explaining difference in outcomes, Journal of Community Health
Bounds, Bumpus & Behringer (2011) The minigrant model: A strategy to promote local implementation of state cancer plans in Appalachian communities, Preventing Chronic Disease.
Behringer & Krishnan (2011) Understanding the Role of Religion in Cancer Care in Appalachia, Southern Medical Journal
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The path continues…
Dr. Joellen Edwards [email protected]
Kristine Harper Bowers [email protected]
East Tennessee State University College of Nursing423 – 439 – 4082